It says we are a big part of the population – bigger than anyone previously suspected. The latest numbers make us more numerous than Japanese immigrants, American Jews, or Native Americans, to give just three examples. Like those groups, we have members who are successful and others who are not. Like those groups, we have long been on the receiving end of marginalization and discrimination. Now we are standing up for our rights.

Our numbers rose steadily these past twenty years as we’ve refined the definition of autism. Whether through psychological testing or biomarker profiling, the identified group keeps getting bigger. We realize there is no one autism; rather there are many pathways to a common set of behaviors we call the autism spectrum (ASD). In America, the DSM5 consolidation of Asperger’s, PDD NOS and traditional autism under the one ASD umbrella has made that trend even more obvious.

Critics ask if we are over-diagnosing, but I think it’s more accurate to say that we recognize more people, as clinicians learn to see behaviors that are markers for autism. At the same time, scientists who work to develop biological tests – such as blood assays of DNA, recognition of patterns in the brain via MRI –bring in larger and larger groups of people, and the findings of the experimental tests are backed up by gold standards like ADOS

The CDC prevalence numbers are based on studies of children, which make some people assume we have an epidemic in kids. What they may not realize is that studies in adults find the same rates of autism when the newer evaluation techniques and criteria are applied. That adds to a growing body of evidence that autism has been with us forever, unseen.

We used to think most autistic people were intellectually disabled. That narrow view was based on a limited understanding of what autism really is. As our knowledge grows we recognize more people whose intelligence is in the normal range, and some whose IQ is exceptional. The more autistics we identify, the closer our community’s distribution of intelligence comes to that of the general population.

One thing remains troublingly different - we have more far more medical and mental health challenges than the rest of the population. Some of us are sick from birth. Others can’t speak freely, or understand others. Adults seem to age faster, and develop other medical complications later life. Some of us are profoundly disabled. Then there are depression, anxiety, and the many other psychiatric challenges.

We have one more thing in common: all of us are disadvantaged when dealing with neurotypical society; the majority of humanity. Interestingly, the exact same thing can be said of other minority groups in America.

The biggest difference between us and the other minorities is that we have been invisible until quite recently. We don’t look different, and prior to the advent of psychological testing, we had no way to know who we were. We may have looked at others and seen kindred spirits but lacking knowledge of autism we never knew it ran deeper than that.

Our identity has come at a high cost. For many, the autism label came as a badge of shame. Autism tends to isolate us socially, and most adults my age were not even recognized as autistic until much later in life. Even when we were, the diagnosis was used to describe our problem, and not as a label for our identity.

That’s all changing now.

As we form a community identity we are beginning to take control of our destiny. Some of us are assertive; others are angry. Some are meek but that’s changing too. We’re speaking out. We’re getting a better handle on the broad range of supports and services we need to live in this society. We’re finally recognizing the needs of adults and older autistics. More and more, we’re speaking up and expressing our needs in education, medicine, workplace accommodation, and public policy.

We’re also realizing something really interesting now that we’re seeing the true size of our population – we’re realizing that a lot of our presumed disability is a construct of modern society.

We see that by looking at history, and asking what the autistic people did 100, 500, or 2,000 years ago. When we were thought to be rare it was easy to dismiss us. Now, with the realization that every few dozen households have probably always contained autistic family members, and that autism often passes from father to son to grandson, we have to rethink that question. As common as autism is – and has been – we ask how it could have remained invisible so long.

The inescapable answer is that we blended in. We grew up and went to work, just like everyone else. The social differences that cripple us today were less disabling in earlier societies where people lived and worked in the same small groups their whole lives. The evidence of autistic thought and expression in historical writing shows that we no only "fit in," some of us were leading thinkers. For example, much of Sun Tzu's The Art of War is really a codification of Asperger thought for military success. There's more evidence in the writing of every major religion,and many of the great philosopers.

One could almost say there has been a "hidden hand" of autistic thinking shaping religious and logical writing of the past few millenia. That's one of the things I have been studying here at William & Mary.

Autistic behavior was recognized, but autism as a distinct condition was never described prior to the 20th century because we fit acceptably with the social structures of the time. Our ancestors surely had all the differences, eccentricities, gifts, and challenges today’s autistics have, but they were accepted as natural variation in humanity.

In modern times, we asked: What’s wrong with autistics? We don’t fit in. Now, we are beginning to see the real question: What’s gone wrong with society, that we are now excluded?

There are many answers. Learning by doing in the field has been replaced by abstract book-based education in an artificial environment. Farm work has been replaced by industry. Work in small groups has been replaced by big business. And there’s more reliance on new cognitive skills. Today’s autistics are asked to do things humans never did before. We’re not well adapted to some of them. The artificial environments where we’re asked to work overload our senses.

Until now, all of this has been our problem. It was us that had to change, to fit in. Now that we realize we did fit in – right up to the last century – we ask society to change and welcome us back. After all, the other 98% needs us as much as we need them. We're the ones who brought you calculus, Pokemon, and much of the art, technology, and creative fire that drives the world forward. Through it all, we are people together.

Rather than wait for “someone else” to help us, we are taking charge of our destiny. Autistics – instead of outside observers – are starting to call out for what we want and need. Those of us who speak are advocating for those less able. Parents and professionals still have a role, but it's time for us Autistics to take center stage. More of us are moving into leadership positions in the organizations that support us.

A new day is dawning for our community.

John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept. of Health and Human Services. He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary. The opinions expressed here are his own.

Very nicely put Mr. Robison. Despite huge problems with one on one relationships, I became a leader in my high school. People loved to work with me on creative ventures like differently styled variety shows and even a school mafia that was theatre! My life has surely been an adventure since too.

The thing I like the most is autistic's calling BS on experts.
"Rather than wait for “someone else” to help us, we are taking charge of our destiny." The funny thing is, the most clueless people are the experts, struggling to hold on to their carefully crafted ideas that are going underwater as actual people speak out.

I was talking to a young gal, they want to start an ASAN affiliate in Atlanta...and I said, "There's a change in the air...do you feel it?" She agreed she saw it last winter.She was on a panel discussion for "autism awareness" at the CDC. My son, Ben, has been invited to the initial meeting. Boooyah!

I now enjoy the hell out of a couple of young boys(Mid twenties) who call themselves "Aspergers Experts" (such chutzpah) and are making a living advising families on their children's humanity. I never would have dreamed I would live to see this groundswell. Here's their website:http://www.aspergerexperts.com/ I help them because they have helped me so much! I just bought one tape and watched some you-tube videos. So refreshing!!!!!!

When my son was young...I frantically looked for adults with Autism. There were two, for me. Larry Arnold out of England, and Mel(Amanda) Baggs that communicated online to help raise up the next generation. You have joined the fight...and it is a fight, too. The most amazing thing to come out of IMFAR2014 was the study on the challenges, medically, for autistic adults. It was like somebody cared, rather than trying to be the hero to "alleviate" autism. No child will be alleviated of autism, especially those with the most severe problems, by using ABA to get them to look in their mothers eyes. Crazy...

1. As you pointed out there has been plenty of historical jobs that were doing and didn't require socialising. Just as dyslexics were easily hidden as most of people throughout history were functionally illiterate so too most people were peasants and slaves.

2. Sadly maybe babies and infants who clearly had something wrong were probably abandoned by their parents. For most of history food and resources was scarce so child abandonment and infanticide were rather common.

Well Done John, well written, bold, thoughtful and brilliantly concise. You have expertly brought the strings of my many deep and frequent meditations on this subject into a well woven piece of clear expression. You have spoken truth. Thank you.

Mr Robison I don't agree with your attempts to downplay the extent of Intellectual Disability in persons with autism spectrum disorders. The World Health Organization estimates that approximately 50% of person with an ASD also have an intellectual disability.

That being said it isn't clear to me whether you consider yourself, as a person with a DSM-IV Asperger's diagnosis to have a DSM5 ASD diagnosis given criteria:

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

Do you feel that you would meet criteria D for a DSM5 ASD Dx given your status as a family man, very successful businessman and author, and participant in IACC and Autism Speaks organizations and meetings? If so could you comment on those functional limitations? If not do you think you really have personal insights to offer on autism disorders as opposed to academic commentary per se?

Respectfully,

Harold L Doherty
Father of a son with classic autistic disorder and severe functional limitations.

Harold, the most current data from the WHO and NIH autism groups places the rate of ID in autism at 30%. This was covered in a presentation at the last IACC, which can be found online. It was noted that the rate had reversed in the past decade, from 70% to 30% primarily because more autistic people had been identified on the other end of the range.

It's not a matter of agreeing with me or not. That is the current NIH position, not mine.

Next you ask if I consider myself to have a DSM5 ASD diagnosis. That too is not a question of my opinion. It's the judgement of the clinicians who evaluate me semi-yearly because of my participation in NIH supported autism research. That work requires people in the autism study group to have ADOS/ADI-R based diagnoses, and they must be current. Because of my visibility in the community I am evaluated anonymously by clinicians who have no idea who I am; to them I am just a middle age guy getting screened for autism.

Even though I think I am better every year, they continue find significant functional deficits. In that sense, getting evaluated kind of makes me sad. I know I hide and compensate for my deficits well, but I agree the deficits they find are real. So yes, I am diagnosed under DSM5 and ICD10 criteria by clinicians in our NIH Autism Centers of Excellence program using both ADOS and ADI-R which are the current gold standards in North America.

It may also interest you to know that I am also diagnosed on the spectrum by some of the experimental genetic, MRI, and other biomarker tests which are not yet in general use. Interestingly those tests will put people like me and others with very obvious impairments in the same autism group together. I know you say I am very different from your son, but at some elemental level, tests like those show those of us on the spectrum to have some still poorly understood commonalities.

My reference to the WHO reference of 50% of persons on the autism spectrum also having an intellectual disability was from the WHO web site, Questions and answers about autism spectrum disorders (ASD) dated September 2013.

The study you are citing is accessible on the CDC web sites and contains a number of significant limitations including those indicating a lack of representative character:

"surveillance sites were not selected to be representative of the entire United States, nor were they selected to be representative of the states in which they are located."

Given the limitations I believe the WHO estimates are more reliable.

Jon I understand that there are common elements which characterize persons on the autism spectrum. My concern is when people try to gloss over and render "invisible" those with intellectual disability.

You purport to speak on behalf of people with autism despite your enviable successes and functioning ability in so many important areas of life.

In your reply to me you don't really describe what your limitations are which are not apparent given your history. As I understand the protocols under the DSM5 persons like yourself are "grandfathered" in and do not lose a diagnosis due to inability to meet all of the new criteria. Regardless given your enviable successes in so many areas of life I have difficulty understanding how your life experiences are instructive for those with much more serious daily functioning deficits.

Harold, I'm not going to get into a circular argument about the prevalence of ID in autism. Suffice to say the more "less visibly impaired" people are diagnosed, the more near-average and average IQ people there will be in the autism pool

Nothing in this post glosses over intellectual disability. At the same time, both WHO and APA have stated intellectual disability is not a core trait of autism. The post I wrote is about core traits of autism. The fact that some on the autism spectrum have ID and may not do the more creative things I cite does not take away from the truth of my statement with respect to the autism community.

There are intellectually disabled members of the neurotypical community too. If I'd written a story on neurotypical scientists and their achievements would you take me to task for glossing over the neurotypcials with ID?

The fact is, people with intellectual disability are invisible by virtue of their disability. They seldom do things to attract attention, unless it is localized and unfavorable. I wish someone would write a story that brought their plight to broad view, because there is a lot of mistreatment and marginalization going on. You're totally right to be concerned about that and I know you are because you write of it a lot.

My limitations are described to a large extent through my books. At the same time, I understand my ability to write those books is itself a rare gift, so clearly I have a mix of gift and disability. Beyond that, I don't think many of us herald our weaknesses on the Internet but that does not mean we don't have them.

Jon there was no circular discussion. I don't accept your personal views about the nature of autism disorders. I provided you with a recent statement from a very credible source, the World Health Organization that approximately 50% of persons with an autism disorder also have an intellectual disability and pointed out the serious limitations in your recent 30% estimate. Nothing circular there, you simply rejected authority which is inconsistent with your personal preferences.

You have no personal experience with severe autism disorder and intellectual disability. I do have such experience, having cared for my younger son 24/7 for 18 years.

You are the only one I know of who has tried to argue that the levels of intellectual disability among those with an autism spectrum disorder is the same or similar to what you describe as the "neurotypical" population ... whatever that means.

I met you briefly at IMFAR 2012 in Toronto, saw some of your television promotions and am aware of your impressive successes in several areas. I don't challenge your DSM-IV Asperger diagnosis and do not have the standing to do so. I do object to your frequent attempts to speak on behalf of the broad range of persons with Autism Spectrum Disorders, more particularly the 50% with intellectual disability (and frequently as in my son's case, life threatening seizures).

I simply state my objections to your lack of experience or expertise to speak for those, like my son, for whom is a very real serious disorder and disability.

I do wish you well.

Harold L Doherty
Father of an 18 year old son with severe autism disorder, intellectual disability and epileptic seizures.

Harold, I will agree to disagree about the idea that the average IQ in the autism population is rising toward that of the general population.

As for your statement about my lack of experience speaking for your son - I speak about my views relative to the autism population. I am aware there is a broad range in our spectrum, and I make that clear often. I know people like your son have major challenges and I know the complications such as seizures are real. You and I have talked about my desire to further science to help solve problems like that.

I'm not sure why you object to my message that we have a duty to develop treatments and therapies for those who want them. Do you feel it's inconsistent with the message that our population deserves to be respected for being who and what we are? Some people like your son will what help. Some will want to remain as they are. When people ask for help that help may need to be in many different forms to address the varied needs.

I am very consistent about saying we need more support, especially for autistic adults. That should apply to your son, and I'd hope you agree that is a good thing to speak up for.

Nothing I say takes away from your contribution as a parent. At no time have I questioned your good intentions toward your son, particularly after speaking in person. I'm sure you want the best for him and you push for that as best you can. I'm your ally - not your opponent - in that effort.

I know that people like me (because we seem verbal and articulate) can create an impression of autism that is very different than the reality your son experiences. I can't change that; my reality is what people see when they look at me. I wish more autistic people who exhibit the whole range of our spectrum could be more visible too because I think that would spur better understanding . And I think that is beginning to happen.

I have a son who started off with a label PDD nos and a pretty severe language disorder, very, very atypical, with concomitant learning disabilities. He's twice exceptional now, gifted in some ways with severe learning differences.

BUT, I taught at an ABA school for 7 months. As severe as my son's disability is, it doesn't begin to compare to the problems those kids had. Some were very young, 6 years was the youngest, and no-one over the age of 21. Their behavior problems were so severe that they couldn't be taught in their local school system, they couldn't be handled at home. It was a residential school. Many were purely autistic, some having near average IQ's but something within autism made their behavior unmanageable. ABA was a last ditch effort.

So here we have severe autism, with lack of ID. The kids I am thinking of had no ability to speak or use communication devices, they weren't available. The teachers, for the most part, were great people doing the best they could.

Autism is a communication disorder, but we will never be interested in the kids who don't have the ability to communicate for themselves. It's like they don't exist.

I have always believed higher functioning individuals might be able to use their ability to communicate to help those who have no voice, that is, can't write or talk, or even use an AAC. But they don't. They keep trying to say that functioning level is unimportant. I don't understand that...except someone said that because they are learning lots of the the kids previously thought to be ID aren't. So far it is just a spattering....

There seems to be a medical intensity among the more severe cases of autism that doesn't exist among the Aspergers crowd. This is ignored by science shamefully....the ID kids aren't as interesting. This makes me sad.

In the past, PKU was an early death sentence, and often caused autism. They figured out that the body poisoned the brain by it's inability to rid the body of phenylalanine. Wilson's disease also does similarly with iron. Diet can END the suffering. As simple as diet.We won't even go into epilepsy that arrives often in the teen years, being suspect for a similar body burden.

But, no. The fat, lazy gorgers of 1.5 billion dollars of research funds would rather not look into biochemisty...which has a precedence. Nope, it's all about vaccines and empathy and any other diversion that takes their eye. All one has to do is put "autism" in the lead line, and the research dollars come pouring in. But you know, they really don't give a @#$% about our kids. the parents try to tell them their children are sick, not crazy. But it's easier to label them than to look for answers. The endless labeling....adding, subtracting, and adding again, and relabelling...

You may have read of the school where we teach the auto trade to high school students with developmental challenges here at the Robison Service auto complex. In that program we have a broad range of IQ and social capability. The beauty of a program like ours is that we teach how to fit into a work environment where there is a respected home for most anyone with an IQ of 60-130. I can't say we accommodate every possible person but that's a wider range than most places.

I am well aware there is a population with IQ below 60 for whom employment is a major challenge. If you follow my work on IACC and NIH boards you know I speak for more services and the development of tools to help that group.

I'm also aware (from recent studies) that people with greater autistic impairment tend to have greater medical complications as well. We on IACC are aware this is a critical issue, and it needs to be addressed - both by understanding the scope of the problems and by figuring out how best to help.

As what you may call "a higher functioning individual" I certainly try and speak for people who are perhaps less able to speak as effectively. As to high and low functioning labels - I don't tend to use those terms because people may change functional level situationally or as they age but I take your point that some have far more challenges than others.

Be assured that speaking up for our populations place in the world does not mean I am not also speaking for the development of tools and therapies that make us the best and most comfortable we can be.

Still, there is a disconnect in the autism community, and it is between people who can walk, talk, move, ...have the freedom to chose their live and it's direction.

Then there are the people with autism who are institutionalized at a young age because they lack any ability to take care of themselves, to control their rages. They aren't bad people, and they need love as much as anyone else. And they are loved, mightily by their parents and teachers.

There is a woman who is brilliant, is very kind and is able to help parent's regard even their non-communicative children. She is an "autism whisperer", because she has enough of a touch to guess what children with severe autism must feel, what must frustrate them in a world where their inner world is unknown. Every child is human, has human needs. But she, like you, has a life that would be enviable to many people who didn't have any problems with autism.

What is the disconnect? What am I not getting here? I must be the worlds most ignorant person, and many would agree...but how can each be regarded as equal to each other in autism functioning? Now, see, Temple Grandin has attempted to empathize, but she doesn't see herself as an equal to children with severe, life threatening manifestations of autism. It's illogical to me. It makes no sense.

Do people mean "equal in entitlement to human rights?" Do they mean "equal in the eyes of God?" Do they mean "equally entitled to protection from discrimination?" Those would all be "equals" that would commonly be applied to every human.

I don't ever suggest that every human - autistic or otherwise - has equal ability in every area. That's obviously not true. Clearly the challenges people face succeeding in a given society are vastly unequal too. Some reasons for that relate to individual differences, others relate to societal differences.

We can fight for rights and social change while also recognizing that some of us want and need help at a more basic level. The concepts are not mutually exclusive.

I can understand that. And...having a son who worked for 3-4 hours on homework every night...I feel his and other's pain. Accommodation, which some teachers gave him, was a fantastic blessing.

Judy Endow tweeted something magnificent, in my estimation, yesterday, that hit the nail on the head.

She said:"We don't ask blind people to try harder to see."

You've got it covered when it comes to your fellow man, your fine fellow Aspergians who you can help with a hand up. I can feel a collective sigh among us mothers of kids who will benefit from what you are doing, even if you gave everything up tomorrow! Please don't give it up, or stop fighting for rights!

But some of your brothers and sisters don't have a place to belong, a soft place to land when their parents die. I think that is the major thing parents want you to hear, that they will never lose responsibility for their children. Nor will they ever lose their love. But they need science, medical the most, and they are mostly ignored.

Helping people with greatest impairment is the biggest challenge for sure. We push for residential accommodation and support, and we hope to find ways to really help with function. As you know we've had limited success on both fronts but it's not forgotten or ignored at IACC or NIH or Simons etc.

I just feel like a rising tide lifts all boats, but we are neglecting those who are unable to paddle their own boat, ya know? We say that don't belong...they are ID, not Autistic. They are "not like us."

“The worst evil is the kind that is camouflaged as something else… like an innocent lamb.” This from a girl named Emma who was thought to be too severely autistic to think, I guess. John, please read this post. http://emmashopebook.com/2014/05/20/emmas-take-on-the-tyger/comment-page-1/#comment-28350 It is especially relevant today with the "science" coming out that serial killers are autistic. If you haven't heard it yet, be prepared. I think autistic kids will die because of it, from suicide.

This little girl is someone that most of science would like to leave on the shore. Her family is fed up with science. Maybe it's why Einstein said science without religion is lame. The almighty fact without regard to living people.

"What they may not realize is that studies in adults find the same rates of autism when the newer evaluation techniques and criteria are applied. That adds to a growing body of evidence that autism has been with us forever, unseen."

Do you know of a study that has been done testing adults for autism with the new criteria? I have been unable to find one.

I am aware of several studies with that finding that are being prepared for publication now. By attending science meetings like IMFAR and following groups like IACC (where the public is always free to watch the discussions ) it is possible to get advance notice of these things, often by several years.

Earlier comments in this thread challenged the 1 in 68 number and and the way it was derived. Yet the near-unanimous feeling on the boards and committees that steer this science is that the number is still rising.

The Brugha studies (there are several and once again, not all are published yet) were done by going door to door and using a quick screening tool (the AQ) to identify people who might be on the spectrum. People who scored above were asked if they had autism diagnoses. A few did. They rest were evaluated using current screening tools (ADOS)

The two significant findings that came from that were
- Rates of autism were the same in older adults
- Most of the adults were not diagnosed.

The earlier commenter who said "only 19 diagnosed adults were found in Brugha" totally missed this point - which was just as he said - hardly any of the adults had knowledge of their own autism.